Needed: Culturally Attuned Death Doulas

Unfortunately, the majority of death work is done by people who have very little understanding or knowledge of how bad deaths disproportionally affect our BIPOC neighbors. Let’s change that.

Culturally attuned death doulas work hard to understand cultures other than their own. Dr. Ramona Rhodes is an internal medicine physician at UT Southwestern Medical Center. She specializes in racial and ethnic disparities in older adults’ medical care and told Next Avenue that Black Americans have specific differences compared to White Americans experiencing end-of-life.

“Members of underrepresented groups have been found to opt for more aggressive treatments at the end of life, [are] less likely to participate in advance care planning and [are] less likely to enroll in hospice at the end of life,” Dr. Rhodes said.

Understanding that is a great first step. Once we understand the situation, death doulas and everyone who works with the dying do a better job serving everyone who needs it.

Marginalized At End-of-Life

Communities that normalize conversations around death and dying have more people making advance directives. Those with advance directives are more likely to die at home with more comfort than those who don't.

It's all connected.

So let's understand the reasons why BIPOC and other marginalized populations are less likely to make advance directives or benefit from hospice services.

Financial Insecurity

People in marginalized communities struggle to afford palliative care, which focuses on relieving symptoms and improving the quality of life for those with serious illnesses. Hospice care, which is often provided in the final months of life, is difficult to obtain.

While Medicare and Medicaid do cover some hospice care costs, eligibility and access varies, especially for those without stable living arrangements. Emergency rooms sometimes become de facto end-of-life care providers for uninsured individuals or those without access to hospice, leading to high rates of hospitalization for end-of-life care among low-income populations.

Financial constraints may also make it challenging for Black patients to receive home-based hospice care, which often requires family caregivers who may need to take time off work, adding further strain on low-income households. Too many of our BIPOC neighbors are dying in ways that no one should experience.

I can’t speak for other death doulas, but this is why I take donations, operate on a sliding scale, win grants, and ultimately won’t turn anyone away.

Everyone deserves a good death.

Lack of Concern

The tragic deaths of George Floyd, Ahmaud Arbery, and countless other Black Americans are only the most recent evidence of America’s systemic failure to acknowledge and value Black lives.

It is the foundation upon which this country was built.

Limited cultural awareness results in providers not engaging in important discussions about death, spirituality, or family dynamics. As a result, BIPOC patients and their families may feel alienated from the healthcare system and less likely to receive care aligned with their cultural values.

Limited Access

In undervalued areas with fewer car owners and unreliable public transportation, residents delay or skip medication, often miss appointments, and postpone even urgent care. These populations also have a higher late-stage presentation of certain medical conditions.

Misunderstandings about palliative and hospice care, which some view as "giving up," is a barrier, especially if providers don’t take the time to discuss these options in culturally sensitive ways. The result, as I mentioned earlier, is that Black patients are more likely to experience aggressive treatments rather than comfort-focused care at the end of life.

Additionally, physician shortages in some neighborhoods result in longer wait times for patients. Fewer EMT professionals also means delayed care.

Discrimination

When Black patients seek medical care, they are less likely to be believed or taken seriously. Because of implicit bias, studies have shown that White doctors give Black patients, more than any other racial group, incorrect or reduced medical options.

Black Americans are often more likely to receive intensive interventions, like ventilators or ICU care, in the final stages of life, even if these measures don't improve quality of life. Studies show that one reason Black patients may be less likely to have advance directives is that they don’t have access to resources that explain these options clearly.

Limited Outreach

When many death doulas get started, they join networking groups and senior care associations with few professionals of color. They don’t host as many information sessions in undervalued neighborhoods.

As a result, deaths in Black communities happen at a higher rate, and the elderly don’t even know these options exist.

Institutional Racism

As just one example, in an oft-cited 2016 study, many White medical students recorded wrong assumptions about higher pain tolerance among Black patients. They based their decision to offer less potent pain meds on unsubstantiated misconceptions that Black people had less sensitive nerve endings.

These beliefs began with racist doctors in the 19th century who spread these lies to justify unethical medical testing on enslaved people. 

Lack of Insurance

Almost one in four uninsured BIPOC Americans lives under the poverty line. They disproportionately live in states with reduced Medicaid options. While many of us are one illness away from total financial ruin, this is especially true for low-income populations.

Limited PTO

Part-time, seasonal, and minimum-wage workers don’t get benefits like paid time off or sick days. If they spend precious time caring for themselves or loved ones, they do it at great financial risk to themselves and their family.

History

The U.S. medical establishment has a disgraceful legacy, from pre-colonial days through and beyond the horrific Tuskegee Syphilis Study, of discriminating against and exploiting Black Americans. The collective trauma and memory remain deeply embedded in the community’s consciousness.

Awareness and Understanding

We need culturally attuned and competent death doulas who are aware of this disparity so we work to alter it. Additionally, we must understand:

Religious Faith

Black Americans are more likely to connect their serious health experiences with religious beliefs. As a result, they’re less likely to see a terminal diagnosis or illness as a predictor of life expectancy. My doula colleagues who aren’t familiar with this might mistakenly label it ignorance.

Isolation

A projected 1.2 million elderly Black Americans will face life without their family around. That means fewer caretakers or advocates. As death doulas, how do we fill in these gaps?

Privilege to Plan

Advance care planning is getting more attention. People talking with loved ones and health care providers about what they do and don’t want at the end of their lives is happening. They’re appointing surrogates to help make decisions and advocates to help support those decisions.

They’re contacting family attorneys to legally document their wishes, and this often includes limited life-prolonging treatment if they’re unlikely to survive or maintain their quality of life.

All of this planning is a step in the right direction.

However, death preparation remains a taboo subject among marginalized populations. And who can blame them? When the system has failed and shortened Black lives every step of the way, it’s natural that Black Americans feel a strong reluctance to engage with that same system when planning for death.

Culturally attuned death doulas break down barriers and build trust within the BIPOC community. Because without the benefit of planning, Black Americans are less likely to receive quality death care.

And that’s not okay.

It’s already hard to talk or think about death. If we are not able to properly plan, it’s even harder.

People struggling to make ends meet are a bit preoccupied. They don’t have time to think about advance care directives. Creating a peaceful death is a luxury that many cannot afford. So let’s help turn that around.

Become a Culturally Attuned Death Doula

Those of us learning how to become a death doula must get educated. Let's reach out more to vulnerable communities. Seek those who might partner with us to spread awareness. Offer discounted rates for those who might need financial help.

Our BIPOC neighbors are entitled to the patient-centered care that leads to a good death, one with dignity and compassion. Culturally attuned and competent death doulas make that happen.